Our week from heck, and the hand basket we traveled in.

Sep16
by Jo Tann on September 16, 2015 at 11:15 pm
Posted In: Personal

Everyone has these weeks – not necessarily quite like ours, but the kind of week that leaves you at the end of it numbly slumped on the couch gasping for air looking across the room at your significant other and mumbling ‘what the hell just happened’.

It started as so many weeks do with a Monday, Jenny’s 3rd birthday in fact. Phil spent the preceding Friday, Saturday and Sunday in Canberra with the team from Tea Tree Gully competing at the National Disaster Rescue Challenge. (They came 2nd, go team!) They were supposed to catch a very early flight – LANDING in Adelaide at 7.20am. The first fly in the jam was the taxi company turning up 35 minutes late resulting in everyone missing their flight by 3 minutes. They rebooked on the next flight home, unfortunately it not a direct flight, it was via Sydney. Sydney that day was experiencing fog, delaying flights both in and out.
The problem that this gave us was that this particular Monday morning Alex was due in DOSA (Day of surgery admissions) at the womens and childrens hospital at 7am to get grommets put in. The plan was for Phil to come to the hospital and look after Jenny while I looked after Alex post anesthesia.

Well you know what happens to best laid plans…

After they knew they were going to miss the flight – which itself ended up being delayed – one of our most wonderful friends got a 5am panicked phone call along the lines of ‘please please please could you look after Jenny this morning’. Telly was utterly amazing and did just that (we owe you big time!), and we thought Phil was only going to be a little late and that he could go and collect her. However delays with the weather and the airlines meant that Alex and I finished at the hospital and made it home before Phil even landed!

The grommets went in smoothly and Alex came out of it really well, Phil made it home – at 2.30pm – and life went on as normal. Not the birthday day we envisaged for Jenny, but she loved unwrapping her presents, and loved the presents too!

Fast forward to Wednesday morning Alex was unexpectedly sick, had a sleepy day at school and was sick again upon getting home. Didn’t want any tea, and woke at midnight with both vomiting and diarrhea. Next morning he couldn’t even keep clear fluids down, so we rang the hospital, they were concerned enough to shuffle appointments and Alex and I headed in for a 12 o’clock slot in clinic. They put his tails in and started IV fluids straight away and at 4pm with Alex still unable to keep fluid down they decided it was safer to admit him.

Phil came in with Jenny and we did a swap, I took Jenny home and Phil stayed in with Alex. This turned out to be a fortuitous arrangement as Friday morning Jenny started with the same symptoms, turned into limpet baby and only mamma would do. Alex ended up staying in hospital for 4 days, until he was able to keep food and drink down with no vomiting and the diarrhea dried up. With Jenny unwell we didn’t make it in every day to visit which was hard on everyone. A big downside to all of this was that what with not eating and the vomiting etc Alex has lost a kilo and is back to 13.4kg. Inevitable, unavoidable and unfortunate but still not what we needed after all the struggles we have had getting him to eat.

The doctors did end up diagnosing what was wrong – somewhere, somehow (probably in DOSA) Alex had caught Rotavirus.
Jenny started with symptoms roughly 3 days after Alex, but since she had been immunised against it, her symptoms were less severe and she recovered from it much faster than he did. Alex had been immunised but unfortunately the chemotherapy essentially wiped out his vaccinations and we haven’t been able to re administer them yet.

Alex was back at school today, not quite his bright and shiny self, but on the up.

Phil however has now come down with it.

Is it next week yet?

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Phew… It’s ok, for now at least.

Jul19
by Phil Tann on July 19, 2015 at 11:46 am
Posted In: Personal

2015-07-13 10.27.10

So first things first, sorry for leaving everyone hanging so long after the last post… It’s been something of a chaotic week with Jo and I getting food poisoning followed by Jo going down with a virus keeping her in bed for 3+ days, me playing superdad and not a lot of time to spare outside that.

The scan is ok!

So after talking to the Oncologists the change in the one tumour is acceptable and my theory of it changing dimension but not volume because of Alex growing was met with “I like that theory” from Alex’s Oncologist Ram. So from that perspective we’re looking ok (if not good) for now at least, but the calculations as to Alex’s weight set alarm bells ringing with him – labelling his current weight as critical. 12.6kg at nearly 6 years of age is frankly, third world country weight and very distressing for us and meant that despite what turned out to be reasonable scan results we couldn’t really celebrate.

We’ve done our best along the way and now we’ve upped the ante with little Mr and are pushing him harder than ever to take in calories… LOTS of calories. So we’re giving him a heap of Sustagen Kids Essentials and going through a time every 4 days or so ($30 a pop… OUCH!). But 3 bottles of that is enough calories to meet his daily intake requirement for nutrients and calories. So any food we get into him in addition to this is a bonus and over the last 3 days he’s been eating a bit of pasta and chocolate which is great!

I’d like to nominate myself for parent of the year, Alex had Milkshake (the powder with whole milk) and a milky way for breakfast yesterday! 😀 But it’s calories that are going into him, so we don’t care right now.

In the 11 days since the meeting with Ram and getting lots of the milkshake and extra calories into Alex, he’s put on 1.2kg which means for now, we’ve avoided him having another surgery to have a Gastrostomy (a little tube from the skin on his stomach INTO his stomach) so we can tube feed him. This was a final resort since the NGT didn’t last more than a day or two each time, he vomited them back up. 🙁

So all in all, the results of the scan turned out pretty good. The weight is an issue that we’re doing our best to address and urgently as we can and hopefully we’ll manage to find time, energy and money to celebrate another minor victory over the demon that is cancer.

As always,
Thanks to every single one of you who has taken time to call, text, email or message any other way to check in with us. You help us stay strong and some days its really hard!

If you’re having a drink tonight; please join us by raising your glass (or beer) with a hearty F**K CANCER!

Much Love to all
Phil, Jo, Jenny and our Little Hero – Alex.

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Another scan, good but not great results

Jul09
by Phil Tann on July 9, 2015 at 2:04 pm
Posted In: Personal

2015-05-31 16.36.03

If you’re reading this you’re more than likely aware that on Monday just gone Alex had another MRI. In the weeks leading up we’ve had a few things to be worries about, while they’re not massively concerning collectively there was some concern.

We’ve had a period where Alex has been vomiting a lot, in fact the majority of mornings he would wake with a coughing fit that ultimately resulted in vomiting some phlegm. Unfortunately a vomiting child in our house doesn’t really upset us any more since it has become such common place over the last 2 and a half years. But the prolonged, repetitive nature of the vomiting was concerning.

The other issue; still relating to his radiation therapy (we think…) is that Alex isn’t eating enough and is losing weight, a lot of weight. Its a bit distressing to see how thin he is to be honest, he’s under 13kg and hes very nearly 6 years old. The timing is great for school holidays, it means Jo can keep a much closer eye on Alex and figuratively speaking keep the big stick on him and make sure he is eating. Perhaps because he is feeling better after the cold, perhaps because of said big stick, perhaps a combination of the two – he has begun to eat more food and more regularly which is great news. As long as that translates to weight gain and soon, we’ll be quite happy with that.

On to the MRI – Jo is a trooper, she’s done the last few MRIs with Alex and managed the day really well. After starting in DOSA (Day of Surgery Admission) at 11 am, he went under Anaesthesia about 2:30 for the scan which normally takes around 90 minutes. Jo had a few things to do while he was under which meant she was going to be busy and I was at work, so much like every other day (ie. Jo busy and me at work!). They came home about 6pm and we got on with a normal night and the next day or so of anxious waiting for results.

Tuesday went by with no call…

Wednesday about 10:30 I got the expected call from the Oncology team with the results.

The abridged (and bit I understood) version is that while the results aren’t brilliant, they’re “OK”. There are 3 lesions that the doctors are monitoring; 1 at the initial tumour site, 1 on his brain stem and 1 on his spine. The good news out of this scan is that the tumour at the initial tumour site and the one on his brain stem have shown “stable dimensions” ie. No change which is a very happy break even results.

The not so good news is that the one on his spine has changed dimensions. Not dramatically so, but enough (a couple of mm) to be of concern.

What this means grand scheme, we’re not quite sure of. We have a meeting with the Oncology team on Friday to discuss the results in detail and form a plan of attack for the future so for now thats the information we have and wanted to make sure that everyone was on top of it since we’ve been a bit quiet on the blogging front of late.

As usual I’ll sign off with our thanks to everyone for your messages of love and support via the frightening number of ways to get hold of us. Your support gives us a lot of strength to keep going, so thank you.

Phil, Jo, Alex and Jenny.

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